Re: [DIYbio] Granting research participants access to raw data

On Fri, Jul 12, 2013 at 2:04 PM, Jason Bobe <jasonbobe@gmail.com> wrote:
> It seems strange to me that most research studies today simply refuse to
> make raw data available to the human subjects who enroll in those studies.
> Sometimes researchers attempt to purposefully design "memory holes" and
> other obfuscation, so it is difficult to figure out which data belongs to
> which volunteer, etc.

Isn't that (at least some of that) built-in to ensure the
double-blindedness of the study?

> The Wellcome Trust Sanger Institute in the United Kingdom launched a public
> survey that will inform policy on how genome studies in the UK are governed.
> If you have a minute, even if you don't live in the UK, please take the
> survey and express your favor for access to raw data:
>
> https://survey.sanger.ac.uk/genomethics/

Will the data collected from that survey be open-access?

> So, mvp plans to return data to participants right? Wrong. As their FAQ
> states: "It will not be possible to give participants results of the blood
> tests"

But that doesn't /seem/ to be a choice they've made. Here's the rest
of the FAQ answer:
"Due to regulations under the Clinical Laboratory Improvement
Ammendments (CLIA), we are legally unable to return research results
to participants. Results from the blood tests will not be placed in
participants' electronic health record. Participants should discuss
any health concerns with their doctor or other health care provider,
who can arrange any necessary and appropriate tests."


--
-Nathan

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